Girl Can Rant

Wednesday, February 27, 2013

Back for another Wednesday HodgePodge! I am distinctly feeling as if I need to either decide to blog and get to it on a more regular basis or decide not to blog and give it up. I really lean towards the blogging, but I often just can't find something that I think is worthy of others reading...or I start a blog post and never finish it. I need to push myself harder and have some discipline. But, for today, it is just a HodgePodge!

1. When were you last facing an ocean? In ONE word describe how you felt when you faced that ocean.I was actually near the ocean this past weekend. We traveled to Pepperdine University in Malibu for a debate tournament. We were up on the hill above the ocean and never actually got down to the coastline (such is life at a debate tournament - enjoy whatever surroundings you have from afar), but when I looked out there at that beautiful blue ocean reflecting the sunlight from above, I felt peace. The ocean always makes me fell a little bit of peace...it is so vast and so seemingly empty of the hustle and bustle of everyday life. 2. What are three sounds you hate to hear?My dog barking in the backyard. She is incessantly doing so and it is so aggravating! My mom crying. She is going through a rough time of it with cancer treatments, my dad's dementia, etc. I feel so helpless sometimes when I hear her crying over the phone. Finally, I would say my daughter's name being called for her blood draws. She has to have them relatively often because of her condition and she HATES it...3. This question comes to you courtesy of some real life friends. Hi real life friends! When you shop for clothes do you try everything on in the store or do you buy, try on at home, and then return what you don't like or what doesn't fit?I try everything on in the store. I have learned that I am not very good at taking things back, so it becomes a waste of money for me to wait and find out. Plus, many of the items look horrible when I try them on, so I like to know that before I get them home. The only exception is if I am buying something I already have one of at home.4. February 26th is National Pistachio Day...are you a fan of the little green nut? Do you use them in cooking and baking or prefer to eat them right out of the shell?I am not a big fan. I will eat them if they are around, but I never buy them myself.5. When did you last have to compromise with someone? Were you happy to reach a compromise or slightly irritated it came to that?I am often compromising. The latest compromise was probably with a students of mine. I am usually relatively happy to reach a compromise. But, if it is something that I feel like I was pushed into or had to do because of time constraints, it is irritating. But, I think the last compromise I was fine with.6. Have you ever written a letter to an elected official? Did you get a response?I have only done emails that I remember. I often get response emails, but you can tell they are automated. Oh, I guess the last personalized one was to our Mayor a couple of years ago asking our city to acknowledge Congential Heart Defects Week and I got the letter and the city's fancy sheet that says they are recognizing it. 7. We 'March' into a new month at the end of the week...what is something on your March calendar guaranteed to make you smile?The end of our debate competition year! I love what I do as a coach of speech and debate, but it is a long year and I have traveled more this year than I have in many, many years. So, I will be happy to see it come to a conclusion, allowing me to have my weekends back to myself and my family and hopefully some time to get my life in a little more order than it currently is. I feel like I have made some huge gains since the start of the new year in getting more on top of things, but I still have some big things to get up and over so I can see the other side. I am hoping that some more weekends will allow me to do that.8. Insert your own random thought here.

My daughter was born almost two months early, so our first experience with childhood illness was right away in the NICU. She was only there for a little over three weeks (that's her in the NICU - all wired up for monitoring), but we were at a hospital two hours away from home, staying with my sister, driving 45 minutes there and back everyday, washing our hands and arms and scraping under fingernails each time we entered, and sitting for hours in a small room with multiple babies and nurses, trying to bond with our baby while not being able to ignore other babies with no one there. It was distressing, exhausting, and somewhat depressing. But, we did it.

About three weeks after bringing her home from the NICU, we found ourselves in yet a different hospital - our local hospital. She had been diagnosed with RSV. She was still very tiny - so tiny that they had to put her in an incubator in our hospital room because she was lost in the crib. I stayed with her at night and my husband would come and stay with her in the daytime, giving me a chance to go home, see our animals, take a shower and regroup. Here, we were in a room by ourselves, so there was more of a feeling of isolation than in the NICU. But, it was still distressing, exhausting and somewhat depressing. But, we did it.

After almost a week in the local hospital, we found ourselves in a third hospital. This time, she was flown on a helicopter to get there because her breathing was so labored. We had to go home, pack clothes and follow in our car - another two hour trip away from home. They called before we were half way there to tell us they were going to intubate her and asked, "has anyone talked to you about her heart?" Which makes your own heart stop when someone asks. It turned out that she had an enlarged heart and it was sitting on one of her lungs. We arrived to find her intubated, paralyzed, and looking very, very ill:

It is unimaginable to go from a healthy, if somewhat small baby to this in a matter of a week. In all honesty, I think I was in shock for a while. I didn't know what to do or say or how to behave. As I look back, I think I mostly just didn't think about it. We sat in that room, with a baby who had a machine breathing for her and with no idea where we were going from there or what was happening. After five days of specialists and medications and vague references, she had a heart biopsy - her first of what would be many. They found her heart to be constructed correctly (as opposed to some Congenital Heart Defects in which the heart is constructed wrong), but it was in no way working properly. They advised us to change hospitals yet again, referring us to Lucile Packard Children's Hospital in Stanford, which would become our second home. There was a short talk about her possibly needing a transplant, but it was not something that seemed set in stone. At that point, most of the talk was of getting her so she could breathe on her own again...beyond that, we didn't really know what would happen. In all honesty, at that point, we didn't know IF that would happen.

We were then transferred to Lucile Packard and although they tried to make her heart better with medication (we even got to come home with her for a couple of weeks), we were soon back with a heart in worse shape and transplant as the only option. She spent about five weeks in this condition:

Except, her eyes weren't usually open. This was a rare instance where they let the paralytic off enough that she was able to wake up, open her eyes and react a bit. What you don't see in this picture is the multiple IVs going into her body - she had two IVs and a "main line" into an artery at all times. She was being fed through her nose and through IV nutrition. She had not breathed on her own at this point in five weeks. I did not know when I took this photo, but she would receive her new heart only three days later, on July 7, 2009, just before she was five months old.

Only one week after the transplant, she looked like this:

It may not be easy to see from this picture, but her color was amazingly better, she was breathing on her own again for the first time in six weeks. She was being weaned off of oxygen and she was awake and interactive! She soon after started relearning to drink from a bottle. Three weeks later she looked like this:

She was happy, breathing on her own, and more and more interactive! It is amazing what you can go through in a matter of months.

We have not had it easy since then. As I read in this Huffington Post article about pediatric transplant, you are trading a terminally ill child for a chronically ill child. But, chronically ill is alive. We give Bean medications twice a day to keep her body from attacking her "foreign" heart. She has had to have numerous biopsies and a second open heart surgery since the transplant (to fix a valve that was "bumped" loose during one of the biopsies). She has had to have steroid treatments. She has been in the hospital with pneumonia a couple of times and with a pleural effusion once (from the leaky valve). She has had a tonsillectomy/adenoidectomy that required us to stay in the hospital for four days (even though it is usually an out patient procedure for healthy kids). She has had to have blood draws and echocardiograms and x-rays and breathing treatments more times in her four years than most will have in a life time. But, she is with us. She is active and intelligent and a load of fun. And today, she looks like this:

Not all families with children with heart problems are as lucky as we are. Some are living life waiting...waiting for a "cure", waiting for another surgery, waiting for a transplant, waiting for good news. We are able to live our life knowing that we have what we need right now. We don't know what tomorrow will bring, but at least we know she has the heart she needs now. We continue to have blood draws, echocardiograms, sometimes x-rays and she gets a lot of little infections that require antibiotics to help her fight them. But we make it through.

It is a blessing to have her in our lives. And I want to make sure that others are given that same blessing. So, I urge you to be educated about CHDs this February. Know the statistics, give if you can, and help some other family find the joy we have found.

Monday, February 4, 2013

I've done this meme before and enjoyed it, so here I am again! If you would like to participate on your own blog, you can click the badge above and it will take you to Acting Balanced and you can answer the four questions and add your own for readers to respond to in the comments! Don't forget that fifth question and please don't forget to respond to mine in the comments!

1. Are you good about going to the doctor?

No - I'm horrible! I will go when I am really sick or know that I am in need of some antibiotics, but other than that, I hate going to the doctor and the dentist. I have made it one of my goals to take better care of myself by keeping up with my regular self-care rather than waiting for emergencies to hit. But, we'll see how good I am with follow through.

2. What do you think about the practice of restaurants adding automatic tips for large groups or specific events?

I don't have a problem with it really. I have rarely thought that I would give the server less than what is added and I often will add on a bit more. Since I travel a lot with college students, I can see where these servers would often not get even close to what they deserved without this automatic add-in.

3. When was the last time you went out for dinner?

Because I travel for work so often, I eat out all the time! I was good and did not go out at all while home this past week, but I was traveling the weekend before last, so I went out then. I like going out to eat, but it is easy to get a little burnt out when you are forced to do it all the time. I love cooking at home, but both my husband and I hate cleaning up afterwards, so it takes a little discipline for us to eat at home consistently.

4. What is your best budget saving tip for recovering from an unexpected expense or planning for one?

If only I knew! We are dealing with a recovery from a number of unexpected expenses - tax bill, car issues, the holidays (non unexpected, but always seems more expensive than we planned for), etc. So, I have been trying to only shop for what we really need (I am an impulse shopper extraordinaire, so get me in a store and I'm going to walk out with something I didn't go there for). For me, that is the best budget savings tip. I tried couponing for a little while, but I found I was ending up with a bunch of stuff we didn't want or need and going to the store all the time was causing me to buy other stuff we didn't need. So, in the end, I just didn't have the discipline to actually save money couponing. So, I would say avoid shopping except with a list and think about using online vendors when possible, because you just order what you need instead of wondering around aimlessly in a store!

And, my Fifth Question for you to answer in comments is:

What is your best idea for an easy, but fun, preschooler birthday party?

Sunday, February 3, 2013

February has arrived and with it comes many things: Valentine's Day, heart awareness month and my daughter's birthday! For those of you who might be unfamiliar with my daughter's story, it is recorded over at my other blog A Second Heart. I don't blog much there any more unless she has some health issues, but the back story is there. In short, she had severe heart issues as a baby and had to have a heart transplant at 4 1/2 months old. So, she is part of the 1 in 100 who have heart defects or problems and February is our month to raise awareness. I will be posting more on that in the coming weeks.

In addition to that during the month of February, she also celebrates her birthday. Which is a big deal when you've seen death come extremely close in the past. This is the first year that she has been both well and old enough to understand a birthday, so we're throwing her a party. We are inviting her preschool friends and some former playgroup members to come and we're having it at the Pre-preschool down the street. So, we will have an art project, lots of fun indoor playthings to do like dress up and playdough and a slide and tons of toys. It is perfect for a preschool party in a month that the weather can be a little too unpredictable for a park party. I am horrible at planning and implementing parties though and February is one of my busiest work months. So, I'm really going to try to keep it simple and not put a lot of pressure on myself. Perfection is not necessary - they are three and four years old for goodness sake!

I am also implementing a new blog plan this month with an official editorial calendar! I feel like my blogging is haphazard to say the least. So, I'm going to see if having an editorial calendar will help. I took the cue from Scraps of My Geek Life (don't you just love that name?) who had a fantastic editorial calendar for excel that you can download and fill in with all your blogging ideas! Which I have started to do. So, tomorrow, I start with my first editorial calendar post and I'm hoping that it will continue at least most days (versus being so hit and miss)! I'm excited to have a plan to implement versus just some random idea of wanting to say something every once in a while.

Finally, this month is Valentine's Day. I must say that I find myself to be a little less than pleasant as a wife lately. So, since it is the month of hearts and love, I figured I would try to be a little more of a loving wife this month. I will share some ideas I'm trying and some blogs I'm finding that I hope will be helpful in that pursuit.

My focus this month is Heart and Soul. Heart because of Valentine's Day and heart awareness and Soul because I need to do some soul-searching to find myself and my place in this world. I am feeling incapable of being the Girl who Can Rant because I'm unsure what I should be ranting about - good or bad. And that, for me, is a little scary. I just feel a little lost from my usual place of being. So, I will be doing a little bit of work on that as well this month. And hopefully, but the time March rolls around, I will have a better marriage, some things I can rant about from a place of security, and a healthy daughter who stands as a testament to the lifesaving gifts of modern medicine. And I hope that you will know more about all of these things from reading the blog!

Patience waning...Too much to do!

Wednesday, January 16, 2013

The winner of the Starbucks giveaway is Jolene, with the 10th of 12 comments! I have emailed Jolene to let her know, but if you haven't got the email yet and are reading this, Congratulations! Check your email!

I appreciate all of those who responded to the post and started following. I will be following any of you who mentioned having a blog! And I have finally finished my six weeks of more travel than not travel and will hopefully be posting on a more regular basis here!

I have a few things I would like to do: get caught up on the Picture A Day project and post those here, do some before and after photos of my two big decluttering/organizing areas - the garage and the guest bedroom closet, and get my Christmas decorations put away so the house starts to look a bit more normal, oh, and talk a little bit about The Compact that I have been considering, but not committing to.

So, there you have it. Congratulations to Jolene and I look forward to hearing from the rest of you for a future contest or just through a comment on a post here and there!

Thursday, January 10, 2013

I have a new love. No, I'm not getting divorced or anything! I tried Starbucks' new Vanilla Spice Latte this morning and it is my new favorite coffee drink! I am a latte lover at heart, but the sweetness factor in a lot of the flavored ones has driven me away from them. Since I love the Christmas flavors (Gingerbread and Pumpkin Spice), I will order them, but with half the usual amount of syrup. And, that is usually pretty good for my taste. But, I ordered this Vanilla Spice Latte with the full syrup and with the sweetness and spiciness, I really think it is a perfect fit! The spiciness seems to cut the sugary flavor of the vanilla just the right amount. I can't say this will be good on my pocketbook goals for 2013, but I am certainly happy to have a drink I can look forward to when I do decide to spend some cash at Starbucks (or when I get that gift card that I save up MyPoints for during the year!

So, because I have fallen in love with this new latte experience, I have decided to offer a giveaway to my readers (and there are not a ton of you, so the odds are pretty good I think!)! I will give a $5 Starbucks gift card so you can try the new latte in the largest size you would like AND give a coupon for a free Tall Blonde Roast drip coffee (for those without the fancy coffee taste)! All you have to do is (1) become a follower via GFC (in the sidebar) and (2) comment below with your favorite coffee drink (or if you are a non-coffee drinker, your favorite thing to sip on during these cold winter days). Let me know in your comment what name your GFC follow is listed under. Even if you aren't a coffee drinker, you can enjoy something else with your $5 gift card and share the coupon for the free Tall coffee with a friend or family member! Each entry will be assigned a number and I will use a random number generator to choose the winner on January 15, 2013! I will email the winner, so be sure to leave your email along with the comment!

I have received no promotional materials from Starbucks for this post - I just thought I would share!